Millie

I believe that medicare, if you are on it, only pays for HBOT for diabetic non-healing wounds. I had HBOT, off label, for nerve damage. I paid out of pocket for 2 treatments a day for 4 weeks.

Yes, I also can recharge my inogen portable batteries in the car. In fact, I do it all the time now.

My pulmonologist handled the RX for me. I had to provide him with a copy of my latest Federal tax return and he included that with a RX for OFIV. I was approved to get it free. I was very surprised because my income is quite high, I think. I would ask my pulmonologist to do this if I were you.

I’m on Ofiv but started very slowly so my body could tolerate it. Optimum dose is 150mg twice a day. I started with lower dose of 100mg twice a day and stayed on it for 2 months. No side effects. Then, I took 1 150mg pill in the am and 1 100mg pill in the pm (12 hours apart). Still no side effects. Did this for 2 weeks. Then I moved up to…[Read more]

I’ve never had one yet but I do have 2 tanks that provide 10-12 hours of oxygen each. Then I have 3 other smaller portable tanks that each last 3-5 hours. Then I have 2 inogen battery operated portable units, each with 2 batteries. That should give me another 20-25 hours. I think I’m in good shape for a power outage. I’ve also notified my…[Read more]

How is your heart rate? When I get out of breath my heart rates goes way up. This breathing problem puts a lot of stress on your heart. My husband had emphysema and eventually his heart gave out. So be sure to keep an eye on your heart rate. I use an oxometer. Everyone with PF should have one.

Lucky you. I used to swim laps 3 days a week and can no longer do so. I use oxygen 24/7 but only at 2 litres. I can swim some but when I get out of the water and check my levels it is down in the 80’s.

I, too, was recently diagnosed—-in December 2021. It was quite a shock as I am very active, swimming laps 3 times a week exercising in the gym daily, line dancing and many other activities. I am 82. The scarring showed up on an x-ray I had done 3 years ago but I was never told about it. Pulmonologist said I could have had it for many more…[Read more]

Hi Charlene:
I re-read the article from Cedars Sinai and found that it also refers to NAD and sirtuini. This NAD is a coenzyme that is similar to vitamin B3. Perhaps it should be taken as well with the zinc. You can buy both NAD and sirtuini on Amazon. Does anyone have any thoughts about this? I’d like to hear back. Thank you. Millie

Is the 100mg of ofev effective at slowing down the scarring?  My doctor tells me that the trials were done on the 150mg twice a day.

My doctor didn’t answer me when I asked if the 100mg twice a day would be effective.  He said the trials were done on the 150mg twice a day.  Glad to hear that someone on 100mg is finding it effective.  That was a big question mark in my head.

I don’t think what you’re doing is a good idea.  Check with your doctor.  I was told to take it with protein—-peanut butter rather than jelly.  I have been on 100mg twice a day for 2 months and just started to raise my dose.  I’m taking 150mg in the am and 100mg in the pm.  So far so good.  Next week I will go up to the 150mg dose twice a day. …[Read more]

Hi Jim:

Wow.  I’ve had covid plus 2 boosters and am not aware of any decline in my lung function.  I guess ev erybody reacts differently.   I am 82 years old and was diagnosed in December 2021.  I had it for 3 years without any symptoms prior to diagnosis but was never told.   My pulmonologist tells me that I could have had it for many more y…[Read more]

Well, Chuck, be sure to let us know what your GP decides about zinc.  I don’t think there would be a noticable difference in only 12 days.  Sometimes things are changing inside of our bodies that we are not aware of.   Let’s keep up our hope for that positive change.

How many mg are you taking?

My pulmonologist tells me that he doesn’t know anything about supplements.  I don’t see my GP for months and don’t know if she would know either.  Good luck and be sure to let us know what they say.

Hi Charles—-I love your sense of humor.  Never lose it.  So, I’m waiting to hear back from you as to what you find out.  What is your take on the zinc/copper combo pill?

I’ve been looking at zinc/copper supplements.  What I’ve seen is 30mg of zinc combined with 2mg of copper and 50mg of zinc combined with 2mg of copper.   They say that zinc depletes copper so the combo is better.  Then I read somewhere that you are not supposed to take the two supplements together.  I’m confused.   Can someone straighten me out on this?

I have been taking 30mg of zinc on a daily basis. I have no idea if that dose is too high or too low. I recall reading somewhere that too much zinc can cause other problems and the 30mg was recommended. Does anyone know what the proper safe dose is? The article doesn’t mention that.

Has anyone tried Metamucil for the diarhhea?  I was very surprised when my doctor recommended it as I thought it was only for constipation.  I was told that it bulks you up and it really worked for me.  Give it a try and let me know how it goes.